AHP Interview Study

An interview study is underway to understand patient experiences with acute hepatic porphyria.

We are looking for individuals ages 15 and over in the United States or Canada who have acute hepatic porphyria (AHP).

As part of this study, you will complete a one-on-one approximately 90-minute telephone or videoconference interview scheduled at a time that works well for you, and you will later fill out three online questionnaires that take approximately 20 minutes to complete.

You will receive $150.00 USD or Canadian equivalent as compensation for your time to participate.

This is not a medication-related study. No medication will be given or tested during this study.

The information you share may contribute to knowledge about acute hepatic porphyria (AHP).

Your name and contact information will remain only with the research team and will not be shared.

Please note, you/your child may not be eligible for the study if you/your child: have taken GIVLAARI (givosiran) or hemin prophylaxis within the past six months; reside in Alberta, Saskatchewan or Newfoundland and Labrador; are between the ages of 15-17 and reside in Quebec; or have certain medical conditions.

For more information or if you wish to participate, please reference the study code AX10047A Acute Hepatic Porphyria Study and contact us:

• By email at ResearchStudy@adelphivalues.com to learn more about the study, ask any questions, or schedule a time to be screened.

• By telephone at (617) 720-0001. Please leave a voicemail with your name, telephone number where you can be reached, and the study code (AX10047A), and the recruitment coordinator will follow up to provide more information answer questions or schedule a screening.